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Wednesday, March 02, 2011

Nine Years and Counting

March 2 always brings mixed emotions for me. It was the day, in 2002, when my life changed dramatically, though of course I didn't realize it at the time. Here's what I wrote in my journal that day:

The plan was to stay home today, get some stuff done, and have a vacation day in Baltimore tomorrow. Today went OK, but now I'm feeling rotten with a bad sore throat...?

The next's day's visit to Baltimore was horrible for me, as I pushed myself through the Aquarium, science museum, shopping, and walking. Seven years later, in March 2009, we went back to Baltimore and I was able to enjoy the trip (with meds, naps, and pacing).

For many years, March 2 was a depressing anniversary for me. Here's what I wrote in my journal on March 2, 2003:

A whole year of my life.Maybe it’s appropriate that I’m feeling so horrible – a reminder that it’s not over.I just want to give in to whatever this is.I’m so tired of trying to keep going when I don’t feel well.I feel like just giving up and being sick, staying in bed.It takes too much energy to live my life and I have no energy left.

I wasn't even diagnosed yet at that point and was living an exhausting, painful life in limbo.

So, I am extremely pleased that today, I am feeling very optimistic, at this 9-year anniversary. Personally, 2011 has been very good so far. I started a new treatment in January, beta blockers, that has helped me to be more active. I just came back from a 30-minute walk with my friend! Yesterday, I started another new treatment, Immunovir, that I hope will help with my immune system dysfunction. I'm doing better than I have in years. Yes, I still have CFS and still live a fairly restricted life, but even the smallest improvements make a huge difference in quality of life with ME/CFS. And in the wider world, research is ongoing into XMRV, anti-viral therapy, and lots of other aspects of CFS. Even the news media has started to talk about ME/CFS in a serious way. Things are good, and the future is looking brighter.

Now, if only I could magically cure my kids, than all would be right with the world.

Happy Illiversary, Sue! You have been a light and a blessing to the CFS community. I'm sorry it has come at such a high price for you. We're looking forward to the day you can graduate from our ranks.

I know what you mean about the smallest improvements bringing joy. It's like how good 30 degree weather feels after a 5 degree cold snap. You appreciate it so much more. I'm glad your new treatments are working. Good luck with the new meds, too.

Congratulations on being able to write such a hopeful account of your illiversary! I'm glad to hear that your new meds are helping. I hope that 2011 continues to be good to you and that your boys are back on the up asap.

I don't remember the exact date I was stricken. I just remember that it was right before Christmas 13 years ago!

What a long journey it is being for all of us.

What do the beta blockers do exactly? I am going to have to ask my new doctor if he knows about them and also about Immunovir. Glad you are feeling somewhat better! And of course, you know I am thrilled about your 30 minute walk!

I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on living and enjoying our lives in spite of these challenges.

About Me

I'm a freelance writer who loves to read and cook. My husband and I have two sons, and we all enjoy travel and being outdoors. My older son and I both have chronic illnesses, but we focus on finding joy in every day!